Clouds, May 2010

Clouds, May 2010

Wednesday, September 5, 2012

first grade

Every day there are proud parents sharing pictures via social media. Most recently, they're somewhat nervous parents sharing an image of their child about to begin the new school year.

Tomorrow I will likely be another proud, nervous parent sharing a picture of mine.

But first things first. I am going to my son's school today, during a teacher-in-service day, to speak with about twenty or so members of the staff about fragile x syndrome and Hayden (which I am nauseously-nervous over).

His speech therapist of the past four years has created an entire PowerPoint presentation, and I will distribute a new Student Profile I created for Hayden as well as fragile x resource sheets. 


During the anticipated two-hour presentation, the speech therapist along with Hayden's former teacher will do most of the talking. I will contribute for about 15-20 minutes during a question & answer session.

Needless-to-say, our first grader is not the same as other parent's first graders. Yes he is moving on from kindergarten the same as the other kids, but he is nearly a year older than most of them as we knew he would benefit from an extra year of preschool.

The parents of the other first graders are not coming to the school for a workshop about their son's disorder. They're not thinking about when they will speak to the class on a similar level, to make sure the curiosities of their child's peers are addressed. For most of these parents, their child's needs may include having their lunch cut up for them, or help with tying their shoes, or assistance in making sure some of their letters are not written backwards.

Their children will not arrive to school via a smaller vehicle from the district's transportation company. Their children will not carry a parent-teacher communication journal in their backpack. Their children will not be leaving class for therapies. Their children will not need extra clothing stashed in the classroom to prepare for toileting accidents.

So this sort of sucks if you look at it that way, doesn't it?
But parents such as those of us with children with truly special needs, have had to rework our way of thinking. This will never end.

Am I annoyed that it's one day before school begins and we're still ironing out transportation? Am I concerned that it's one day before school begins and we're still pending schedule details to prepare our son for the first day? Am I frustrated that the teacher of the classroom he was placed in is going to change mid-year due to maternity leave? Am I angry that we only learned of the upcoming change in routine with his afternoon Aide because his former teacher told us? Am I exhausted from having my radar up to all of these new details and inconsistencies? Yes, yes, yes, yes... and yes.

As Hayden's parents, no two people know better than us just how difficult a bad day can be (it brings a whole new meaning to the word "challenging"). Therefore I do not envy the job of the teachers. But likewise, we also know just how off-the-charts rewarding a good day will be. I do want all of the teachers to have the opportunity to witness those days.

So you see if our son was the same as other parent's first graders, he would not have a special ed instructor teaching him academics in a setting that is appropriate for his individual learning style. He would not have an occupational therapist who works with him to enhance his self-help skills, or a physical therapist who taught him how to pedal a tricycle. Nor would he have a one-on-one Aide who remains tireless in her efforts to keep him on track, on task, and focused. Even if it means sitting close enough for him to recognize a piece of mint gum in her mouth, which she figured out the scent of calms him.
He would not have a former teacher who, out of the kindness and generosity of her own heart, is opting to remain involved in his education plan. (He would not have an Individualized Education Plan.) He would not have a speech therapist who put together a presentation to share alongside said former teacher, so together they can educate other staff members on how to help our Hayden.

In short, he would not have a team of people looking out for his best interest on a daily basis... some of whom, this is their primary responsibility.

Our first grader is not the same as other parent's first graders. Instead of expecting him to write his first and last name correctly, we will be proud of him for drawing his "H". Instead of expecting him to read a new book, we will be proud of him for visually identifying more and more new names and other words. Instead of expecting him to make progress with complex math assignments, we will be proud of his improved counting skills. Instead of expecting him to paint a masterpiece in art class, I will be proud of him when he completes a craft.   

I will never need an honor roll bumper sticker on my truck for anyone to know just how much I believe in my son.

He is our first grader. And our expectations are that we will have another school year of being proud of him.


  1. BRAVO, so beautifully and powerfully said. I'm mom to Max, another kid with special powers who kicks butt. My pride for him is as strong as my pride is for my so-called typical child. I hope Hayden has a great first day at school! Tomorrow is Max's as well. (And we found out about bus transportation YESTERDAY, he, he).

  2. so typical, right? thank you and good luck to max! hope he has an awesome year!